Dan Swearingen | July 10, 2016
The summer of 2014, after Ian left high school he started reminding us it was time for him to move out. Janet and I were both “yeah, yeah, yeah, we’ll get the paperwork started.” Ian was 19.
We have worked with other families to help their children move out of the family home into some sort of more independent living situation. It can take years to find the right situation. Here in Marin County we usually work with Lifehouse Agency. For living outside the home in California there are basically three places the funding comes from: state and federal funds from Social Security Insurance funds, the Regional Center (in our case the Golden Gate Regional Center), and support from the family.
The previous summer we had thrashed out Ian’s SSI situation. Ian is a medium verbal autistic and is considered 100% disabled. Other than a pile of paperwork and some office visits, our Social Security Administration experience went well. Your mileage may vary… Anyway SSI: DONE.
Ian had been a regional center client since he was 3 years old and we had kept his status up to date. This mainly entailed a home visit each year by his case worker(s). We never received any financial assistance from GGRC when Ian was a minor but Regional Center support is crucial once your child is an adult. Anyway, the annual meetings kept his account open. Regional Center client status: DONE.
The first step for supported housing is to contact the regional center. Janet made an appointment to get the process started. She also contacted Lifehouse Agency to get Ian onto their list. A year or so earlier, Lifehouse had opened a new residence less than a mile from our home that was specifically for young adult autistics and we hoped, one day, he might be able to move in.
With all the phone calls made and paperwork submitted we settled in for the long wait. Given our experience with others and the stories we had heard, we fully expected to wait for a year or more before a residence opened up. On the waiting list at Lifehouse: DONE.
Less than two weeks after contacting Lifehouse a bedroom came available at the Corte Madera House with three other autistic men. It’s in a nice neighborhood, two blocks from stores with nearby bus stops. The house has a staff person on hand to help guide housekeeping and shopping and stays overnight. Only two miles away from our house, all downhill. We can be there in minutes. No excuses, it was a perfect first placement.
We had gone through the motions to appease Ian’s growing desire for independence but Janet and I were not really ready for this.
We thought perhaps the GGRC approval would slow the process down. But they thought the placement was excellent and fast-tracked the paperwork. So, two weeks after deciding to look for an acceptable new home for Ian, we were packing his bags.
Ian was enthusiastic about every step. We wanted to keep his bedroom at our house intact as a safety net. We raided Ikea for his bedroom furniture: bed, desk, chair, and dresser. He took his clothes, PC, TV set, books, and a few movies. We put together a basic set of pots and pans. Dishes and such are shared at the house.
For Janet and me, all of this was another of those “this is what we should be doing ((but I don’t know if it will work) and I’d really rather things just stay the same)” moments. We had a swirling kaleidoscope of emotions and a long list of worries. And fears. And nightmares.
Will he starve? Will he eat nothing but junk?
Will he forget to shave? Brush his teeth?
Will he hate his roommates? Will they hate him?
Will he die in his sleep? (I did not claim these were rational fears…)
Will he remember to wear clean clothes?
Will he get enough sleep?
Will he be lonely? Depressed?
Will he overdraw his bank account?
Will he get scammed by somebody?
Imagining failure modes is one of my superpowers. I can probably brainstorm another hundred worries.
Moving Ian into the house was extremely hard for Janet and me. So hard and so upsetting that this is why it has taken nearly two years to write about it and share the experience. Meeting Ian’s roommates and moving him in was one of those times it was really forced into our face: our son is disabled and his adult life will be very different from other kids his age. In our bubble at home we could fool ourselves that all was normal and we could imagine the future. Reality hurt. Still hurts.
Four autistic adult men share a house. What do you think it looks like? Depressing. Silent. Ian’s roommates are all at least ten years older.
For Ian, moving out has been amazing. His confidence has grown. His functional independence has grown. He refuses to ever spend the night back home and has relented only when he was recovering from getting his wisdom teeth pulled, down with a cold, or during the holidays when his house is empty and the staff are away. We are planning more major dental work so we can see him more. Ian calls us every night before he goes to bed and he’s used Face Time to do things like have us help him find the right settings on the washing machine.
We see Ian nearly every day at Autistry. Ian continues to attend College of Marin and as the second anniversary in his first house comes up he is starting to think about what the next house will be.
He keeps reminding us that “Animal House” is still what he thinks is ideal housing while attending college.